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When your life is affected by chronic pain, the search for solutions can make you feel desperate, alone and afraid. If the symptoms you are experiencing are due to interstitial cystitis (IC), we want you know that there is hope. Please click on one of the links below for information that you may find inspiring, educational or otherwise useful.

Meet real IC patients who have found relief

Terry Jo Myers

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Terry-Jo Myers

I was diagnosed with interstitial cystitis when I was 21 years old, just before my senior year of college. I woke up early in the morning and I had the urgent need to urinate, and pain in my bladder. It felt like I had paper cuts that lined my bladder wall, and then urine would hit those paper cuts. More...

Phil Stephens expand all   |   close all
Phil Stephens

I first experienced symptoms of interstitial cystitis when I was 42 years old and I was on my honeymoon, of all things. I had fairly severe perineal pain [pain in the area between the anus and the posterior part of the external genitalia], which would not go away. It was like someone was pinching me with a pair of pliers. More...

When I got home, I went to the first of 4 urologists in an attempt to diagnose what was wrong with me. The first one did a cystoscopy. I was in this extreme pain, and I will never forget him saying to me, "Well, you were a little red in there, Mr. Stephens." And I thought, "A little red? Where is he coming from?"

Even though there was no infection, he put me on antibiotics. I remember wondering about that at the time. Of course, the medicine did nothing for my symptoms.

After about a year and a half, I had the first of 3 surgical procedures. My urologist was convinced I had benign prostate enlargement that was impinging on my urethra. The first surgery was a balloon-type angioplasty, which did nothing to relieve my symptoms. After about a year I had the first of 2 transurethral resections of the prostate. But again, after each surgical procedure there was no improvement in my symptoms.

At the depth of my illness, in addition to the pain, I was going to the bathroom about 25 times a day. And so my quality of life diminished by major proportions.

I bounced around to 2 more urologists. I was referred to a psychiatrist to treat me for sexual problems that I was experiencing with my wife. It was true that I was, in fact, experiencing sexual problems connected with this intense perineal pain, but he was trying to solve that by some kind of regimen that involved each partner touching each other. So I finally just decided that I had had enough of all that.

In the course of all this, my marriage did come to an end. It did really do a number on my sex life. And there was a considerable loss of sexual confidence.

Finally, I went back to the urologist who had performed the earlier surgeries. He told me he would go in, take another look at me, and see if he could figure out what was wrong. When I woke up in the recovery room, he told me I had interstitial cystitis. He took some pictures of the inside of my bladder and showed me the strictures along the bladder wall.

Of course, I had never heard of IC before.

Soon, I began a new treatment consisting of taking ELMIRON, Elavil and Wellbutrin. I would say it took about 6 months for me to experience an improvement. And it was very subtle at first, so you would wonder if you were making it up. But I'm glad that I stuck with the new treatment, because I am now about 85% improved. I wish I could get my symptoms to that last 100%, although I must say, I have never watched my diet, and perhaps that could have something to do with further improvement.

Now, I have a new girlfriend that means a whole lot to me. I can do anything I want to. I founded a new business in 1998, which is now Stephens Property Group, and that has been very demanding, but I'm pleased to say we made very good progress. IC used to cause me real problems flying on airplanes and taking long trips in cars. But those things are no problem today.

I feel very blessed to have recovered to the extent I have.

 


The following organizations can provide additional information and support for those with interstitial cystitis:

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Interstitial Cystitis Association of America (ICA)

     110 North Washington Street, Suite 340
     Rockville, MD 20850
     Phone: 1-800-HELP-ICA (435-7422) or (301) 610-5300
     Fax: (301) 610-5308
     Web site: www.ichelp.org

Interstitial Cystitis Network (ICN)

P.O. Box 2159
Healdsburg, CA USA 95448
Phone:(707) 538-9442
Fax:(707) 538-9444
Web site: www.ic-network.com

National Kidney and Urologic Diseases Information Clearinghouse

3 Information Way
Bethesda, MD 20892-3580
Phone: 1-800-891-5390
Fax: (703) 738-4929
Web site: www.kidney.niddk.nih.gov

American Foundation for Urologic Disease

1000 Corporate Boulevard
Suite 410
Linthicum, MD 21090
Phone: 1-800-828-7866 or (410) 689-3990
Web site: www.afud.org

American Urogynecologic Society

2025 M Street NW.
Suite 800
Washington, DC 20036
Phone: (202) 367-1167
Fax: (202) 367-2167
Web site: http://www.augs.org

International Association for the Study of Pain

909 Northeast 43rd Street, Suite 306
Seattle, WA 98105-6020
Phone: (206) 547-6409
Web site: www.iasp-pain.org